CFS or Lyme?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Dec 29, 2009.

  1. greatgran

    greatgran Member

    After reading many post and doing research I am now more confussed than ever. Could I have Lyme or is it CFS how do you tell the difference? I have been tested for Lyme which of course came back negative.

    Would it be worth having my doctor order a $250.00(or more) test to get an accurate test to rule out or confirm lyme? My doctor is clueless when it comes to CFS etc. and admits it . There aren't any docs in my area that are and I sure don't feel up to traveling out of town unless necessarty.

    Any input would be appreciated .


    [This Message was Edited on 12/30/2009]
  2. Nanie46

    Nanie46 Moderator


    I can understand your confusion.

    First, it is VERY IMPORTANT for you to know that Lyme should NEVER be ruled out with a lab test.

    Lyme is a clinical diagnosis, based on history and symptoms.

    Therefore, it can be important to find clues in a lab test, but many people with Lyme have only ever had negative lab tests, including me.

    You could have your Dr order a Western Blot for Lyme IgM and IgG, test #188 and #189.

    Forget the Lyme screen/ LLMD does not even bother with that test.

    Call Igenex and request a free test kit with prepaid fedex label. Everything is in the kit, including the Dr's order form and instructions for the lab.

    Have blood drawn on a Mon or Tues morning, so that it can be immediately prepared by the lab and sent via 2 day fed ex, arriving at Igenex before the end of the week.

    Allow 10-14 days for results to be sent to your Dr. If Dr does not recieve them, call Igenex and request that they be faxed to Dr....fax # should have been provided on the order form.

    You must get a copy of your results from your Dr...this is very important...because the Dr will not know how to interpret the results other than what ever it says on the CDC negative, and Igenex negative.

    Look at each band result and compare them to the western blot info on page 7 of this Lyme expert's paper....

    and also compare the band results to this Lyme experts info......

    Even if you don't have any Lyme specific bands show up, you can still have lyme....bacause testing is not perfect and neither is our immune system.

    Look at the symptom checklist on pages 9-11 of Dr B's paper....maybe print it out if you can...

    Do the checklist. Do you have many of the symptoms listed? Look at how your illness started, which is your history.

    Does it seem to make sense that this bacteria could have caused your illness, and do you have many of the symptoms?

    You know what they say...if it looks like a duck and quacks like a duck, it's probably a duck.

    CFS is a syndrome of other words, a group of symptoms.....and those symptoms have a cause.

    If your Dr cannot treat the cause of your CFS because he does not know what it is, then it it time to move on and investigate possible causes so that you have the hope of recovery.

    Think of the CFS as a symptom and not the final word. Get an Igenex western blot IgG and IgM...mine was $200 one year ago...not sure if prices have changed.

    Wishing you improved health in 2010.

  3. greatgran

    greatgran Member

    Thank you for your reply and all your info.. I am not sure what I have but for now will try to live with it until I can find some answers. We live in a small town with few doctors and no answers.

    I stay so confussed as the CFS and Lyme symtpoms are so much alike. When I feel up to it I may do some doctor searching or at least try to get to the one here. Its bad when you feel to bad to go to a doc.

    God Bless,
  4. Nanie46

    Nanie46 Moderator


    You are welcome.

    I just read your profile.

    Along with lyme, your symptoms of anxiety, panic attacks and swollen glands point to a bartonella infection, which is commonly associated with lyme.

    See pages 24-26 of this paper for info on Bartonella and Bartonella-like organism infection......

    Is there a Lyme disease support group in your area that you could call for the name of a Lyme literate MD?

    You can also find LLMD's in your state by posting on the Seeking a Doctor Board on[This Message was Edited on 12/30/2009]
  5. Nanie46

    Nanie46 Moderator

    Do Bartonella Infections Cause Agitation, Panic Disorder, and Treatment-Resistant Depression?
    James L. Schaller, MD, MAR; Glenn A. Burkland, DMD; P.J. Langhoff

    Authors and Disclosures

    Posted: 09/13/2007; Medscape General Medicine. 2007;9(3):54 © 2007 Medscape

    Bartonella is an emerging infection found in cities, suburbs, and rural locations.

    Routine national labs offer testing for only 2 species, but at least 9 have been discovered as human infections within the last 15 years.

    Some authors discuss Bartonella cases having atypical presentations, with serious morbidity considered uncharacteristic of more routine Bartonella infections.

    Some atypical findings include distortion of vision, abdominal pain, severe liver and spleen tissue abnormalities, thrombocytopenic purpura, bone infection, arthritis, abscesses, heart tissue and heart valve problems.

    While some articles discuss Bartonella as a cause of neurologic illnesses, psychiatric illnesses have received limited attention.

    Case reports usually do not focus on psychiatric symptoms and typically only as incidental comorbid findings.

    In this article, we discuss patients exhibiting new-onset agitation, panic attacks, and treatment-resistant depression, all of which may be attributed to Bartonella.

    Three patients receiving care in an outpatient clinical setting developed acute onset personality changes and agitation, depression, and panic attacks.

    They were retrospectively examined for evidence of Bartonella infections. The medical and psychiatric treatment progress of each patient was tracked until both were significantly resolved and the Bartonella was cured.

    The patients generally seemed to require higher dosing of antidepressants, benzodiazepines, or antipsychotics in order to function normally.

    Doses were reduced following antibiotic treatment and as the presumed signs of Bartonella infection remitted. All patients improved significantly following treatment and returned to their previously healthy or near-normal baseline mental health status.

    New Bartonella species are emerging as human infections. Most do not have antibody or polymerase chain reaction (PCR) diagnostic testing at this time.

    Manual differential examinations are of unknown utility, due to many factors such as low numbers of infected red blood cells, the small size of the infecting bacteria, uncertainty of current techniques in viewing such small bacteria, and limited experience.

    As an emerging infection, it is unknown whether Bartonella occurrence in humans worldwide is rare or common, without further information from epidemiology, microbiology, pathology, and treatment outcomes research.

    Three patients presented with acute psychiatric disorders associated with Bartonella-like signs and symptoms.

    Each had clear exposure to ticks or fleas and presented with physical symptoms consistent with Bartonella, eg, an enlarged lymph node near an Ixodes tick bite and bacillary angiomatosis found only in Bartonella infections.

    Laboratory findings and the overall general course of the illnesses seemed consistent with Bartonella infection.

    The authors are not reporting that these patients offer certain proof of Bartonella infection, but we hope to raise the possibility that patients infected with Bartonella can have a variety of mental health symptoms.

    Since Bartonella can clearly cause neurologic disorders, we feel the presence of psychiatric disorders is a reasonable expectation.

    [This Message was Edited on 12/30/2009]
  6. GoWest

    GoWest New Member

    You have several excellent Lyme specialists in your state. Also, if you are on Medicare it will pay for the lab tests at IgeneX. I would suggest you also get the urine antigen test and be sure you take a week of Zithromax the week you collect the urine samples. You want dead antigen in the urine to get an accurate, positive test IF you have borrelia.

    I can send you names of doctors in your state if you email me off list.
    Paula Carnes
  7. greatgran

    greatgran Member

    I can't take Zithromax as I seem to be allergic to all antibiotics . If I wasn't I would be on an antibiotic now to help with my darn chronic sinus infections.

    Yes I would like names of doctors in my state that aren't a long drive as I can't travel long distance. I am on the NC line and near Wake Forest Baptist Medical Center but I have checked and can't find a doctor even though they may have one . Also about 4 hrs from Duke Medical Center .

    Any help would be appreciated. I didn't have a clue Medicare would pay for lab test at IgeneX so I would like to have them done. My email is

  8. Nanie46

    Nanie46 Moderator


    If you have Medicare you may want to consider having coinfection testing done also.

    You could call Igenex customer service and ask them any questions you may have...

    I can't guarantee that Medicare will pay for everything, but you could check into it, or maybe you would only have a copay.

    The Master Co-Infection Panel is #5099 which includes tests for Babesia microti and duncani, Ehrlichia: HME and HGE, Bartonella henselae, etc.

    Or, if you choose, you could have these done after the Lyme Western Blot.

    As with Lyme, it is possible to still have one of these infections even if test results are negative.
  9. Nanie46

    Nanie46 Moderator

    You may also want to get tested for Bartonella quintana..another common species of Bartonella, through a lab such as MDL in NJ.
  10. greatgran

    greatgran Member

    I have been in bed with a horrible sinus infection, headache, body aches, chills etc. This happens everytime I smell certain smells or get out in the cold or try to be somewhat normal.

    I am so sick and tired of feeling this way. I feel like I have the flu without the cold symptoms.

    Not sure what the heck is wrong with me but if I can find the strength I am going to search for a doc who will work with me. Oh, if I could only take an antibiotic.. I seem to react to all of them.

    What a way to start 2010..Going to stay in bed till Monday then call a doctor and hope to get in soon. If I only knew for sure what I am dealing with.. Heck maybe I have had chronic sinus infection for the past 8 years.

    Appreciate all your help, God Bless,

  11. Nanie46

    Nanie46 Moderator

    Sorry you are so sick.

    It is common for Lyme patients to have chronic sinus infections.

    The bacteria can infect every tissue and organ.

    I pray that you find a Dr who can help you.

    Hope you feel better soon.
  12. victoria

    victoria New Member

    I so sympathize with you!!!! .... the awful sinus headaches have been my most major symptom. I finally broke the back of them with the MP, which I know not everyone can do. Well, I haven't seen a protocol yet that everyone can do as you've pointed out, since you have problems with abx.

    You may also want to look into some of the alternative protocols that involve herbal approaches... and others. Every approach has its controversies and its successes... check the sticky at the Lyme board here.

    I truly hope you can find a good doctor AND an approach that will work for you.... wonder if you can also get tested for the XMRV with MediCare paying, tho that's likely considered experimental I'm sure. Pts with such complex 'clinical pictures' have such a hard time getting someone to work with them, not to mention finding something that works...

    all the best,

  13. herbqueen

    herbqueen New Member

    If you get flu's /colds often you may want to consider buhner's lyme protocol since some those herbs will strengthen your immune system. It sounds like yours is weak. In my case I rarely if ever get a cold (like a minor one every 2 years) and I never get the flu!